Re: Prednisone is killing me

[Guest guest]

Llemar,

Prednisone is rough and you were taking a good amount of it. Are you able to

get/try one of the less severe drugs that you can add so you can taper it?

Sulfasalazine or enterocort?

Are you able to make the SCD yogurt and add more protein to your diet? Even a

few illegals on SCD will give you problems, especially the bread which has

gluten.

Can you make bone broth soup from the fish? Using the fish heads ( but don't

eat them! ) when you make the soup is a good source of iodine for the thyroid.

It may help you to redo the intro diet and progress slowly. Can you eat ripe

bananas?

Getting your Master's is a great accomplishment.I am not familiar with the other

medications you are taking.

Hope you feel better,

PJ

>

> To make a long story short I was put on prednisone upon leaving the hospital

around August 24 this year. That was the worst experience ever but that is

another post for a book maybe. Initially I was put on 120 mg but I knew that was

crazy so I thought it wiser to start with 60 mg. At 60 mg I was dying, eating

like crazy unable to control my eating habits. I was eating anything, one

chicken in a day and had to break from SCD eating ice and bread. It was murder.

My own personal doctor saw the danger and immediately put me down to 30 mg and I

have been tapering ever since. Now down to 20 mg I still have severe leg pain,

insomnia and days when I just have terrible uncontrollable D.

>

> This is really worrying me. I have just started my Masters degree and I have

to be missing class due to this pain and D. My stomach is so sore for the first

time in years. When I take the dose in the morning its like my insides are been

torn apart.

>

> I've come this far and I really need help. I want to graduate in November

since this would be the proudest day of my life. I have had a rough go with

Crohn's to say the least and SCD took me from the brink of death. My diet is

limited right now to green beans, frozen sweet peas, carrots and chicken with

the occasional fish dish. I need to sleep......

>

> P.S I am on Losec to protect the stomach which I cant see the benefits of and

I got Ulcogant which really gives me bad D.

>

> The leg pain is mostly in my calves and its numbing. Any ideas?

>

> Llemar

> Jamaica

> 22 years old

> CD 7 years, SCD 2 years with occasional slip-up

>

[Guest guest]

I have been on Sulfasalazine 2 grams per day and haven't interrupted that. The

bread has always been m=my weakness but since I went down to 30mg those cravings

have gone. I think it was just a matter of my appetitie being absolutely

uncontrollable while on that high dose. I'm not familiar with bone broth from

fish heads., have tried with beef bones and chicken and soup just goes right

through me with some weird gurgling and feelings in my stomach. I do make my

yogurt from Meyenburg goat's milk powder. It's the only goats milk we have here

and Jamaica isn't aware of the benefits of goats milk as opposed to cows milk

apparently. I always thought I ate too much protein as I eat a lot of chicken

and ground beef with veggies on the side.

It's hard because my mother does most of the cooking and shes not entirely sold

on the idea of diet. Maybe shes just fed up with seeing her oldest son suffer.

Without her I couldn't live so I always try to convince her this is the bet way.

Thanks for the response though.

The intro diet I'm not entirely sure since I only weigh 105lbs at 6'0 and that's

a no-no when your mother is skeptical about something.

Llemar

22 yrs old, Jamaica

CD 7 years SCD 2 1/2 years

>

> Llemar,

> Prednisone is rough and you were taking a good amount of it. Are you able to

get/try one of the less severe drugs that you can add so you can taper it?

Sulfasalazine or enterocort?

>

> Are you able to make the SCD yogurt and add more protein to your diet? Even a

few illegals on SCD will give you problems, especially the bread which has

gluten.

>

> Can you make bone broth soup from the fish? Using the fish heads ( but don't

eat them! ) when you make the soup is a good source of iodine for the thyroid.

It may help you to redo the intro diet and progress slowly. Can you eat ripe

bananas?

>

> Getting your Master's is a great accomplishment.I am not familiar with the

other medications you are taking.

>

> Hope you feel better,

> PJ

>

[Guest guest]

Ask your doctor first, but you can go up on the sulfasalazine dose to try to get

under control. In the US it's 2-4 grams a day I believe. Do not do this on your

own before checking with your doctor to see if this is OK for you, as too much

has side effects and you would need to be monitored.

Nut butters are helpful with hunger and weight gain, but are more advanced than

intro. You only need intro for less than 5 days, so maybe you could convince Mom

that it would only be for a short while.

Mom is welcome to come on here and talk to us!! There are lots of moms here.

PJ

> >

> > Llemar,

> > Prednisone is rough and you were taking a good amount of it. Are you able to

get/try one of the less severe drugs that you can add so you can taper it?

Sulfasalazine or enterocort?

> >

> > Are you able to make the SCD yogurt and add more protein to your diet? Even

a few illegals on SCD will give you problems, especially the bread which has

gluten.

> >

> > Can you make bone broth soup from the fish? Using the fish heads ( but

don't eat them! ) when you make the soup is a good source of iodine for the

thyroid. It may help you to redo the intro diet and progress slowly. Can you eat

ripe bananas?

> >

> > Getting your Master's is a great accomplishment.I am not familiar with the

other medications you are taking.

> >

> > Hope you feel better,

> > PJ

> >

>

[Guest guest]

Hy Llemar,

I remember you from your earlier incarnation on the list. Glad to hear you've

almost finished your masters and that you were doing better until recently.

Sorry to hear about your major flare. That's an incredibly high dose of

prednisone -

and no wonder you had no impulse control.

Just a thought for a caloric and healthy food - I was wondering if you can

tolerate

homemade coconut milk - just boiling water and shredded coconut blended and

strained.

And we also have a recipe for coconut yogurt made with gelatin that is very

delicious.

It is quite fattening and delicious. I eat it every day, sometimes twice, with

fruit.

Is there anything at the moment that you can tolerate that doesn't go right

through you?

Broiled meats or eggs or anything?

Feel better soon.

Mara

>

> Ask your doctor first, but you can go up on the sulfasalazine dose to try to

get under control. In the US it's 2-4 grams a day I believe. Do not do this on

your own before checking with your doctor to see if this is OK for you, as too

much has side effects and you would need to be monitored.

>

> Nut butters are helpful with hunger and weight gain, but are more advanced

than intro. You only need intro for less than 5 days, so maybe you could

convince Mom that it would only be for a short while.

>

> Mom is welcome to come on here and talk to us!! There are lots of moms here.

>

> PJ

>

>>>

>>> Llemar,

>>> Prednisone is rough and you were taking a good amount of it. Are you able to

get/try one of the less severe drugs that you can add so you can taper it?

Sulfasalazine or enterocort?

>>>

>>> Are you able to make the SCD yogurt and add more protein to your diet? Even

a few illegals on SCD will give you problems, especially the bread which has

gluten.

>>>

>>> Can you make bone broth soup from the fish? Using the fish heads ( but

don't eat them! ) when you make the soup is a good source of iodine for the

thyroid. It may help you to redo the intro diet and progress slowly. Can you eat

ripe bananas?

>>>

>>> Getting your Master's is a great accomplishment.I am not familiar with the

other medications you are taking.

>>>

>>> Hope you feel better,

>>> PJ

>>>

>>

>

>

>

>

> ------------------------------------

>

>

[Guest guest]

One more thing, Llemar.

Given your very high dose of prednisone - you likely have a big case of

intestinal

yeast - candida - since steroids elevate the blood sugar like crazy and the

yeast thrive on that.

So, s. boulardii will probably be helpful for you. Since it is a non-colonizing

yeast that consumes pathogenic yeast.

http://en.wikipedia.org/wiki/Saccharomyces_boulardii

Here's an inexpensive source for it in the US -

look up netnutri.com and then search for boulardii.

http://www.netnutri.com/browse.cfm/4,4488.html

Mara

[Guest guest]

Seems like you are craving a lot of bread. that happened to me for a while with

pizza and people told me they thought I had an overload of yeast in my gut which

was causing this need to want more yeast. I recently bought s boulardii and

coconut oil to help w the stomach inflammation and yeast overload if I have

that. Just started so unfortunately no feedback for you on that yet.

Maybe you are having yeast overlod as well?

Good luck

> >

> > Llemar,

> > Prednisone is rough and you were taking a good amount of it. Are you able to

get/try one of the less severe drugs that you can add so you can taper it?

Sulfasalazine or enterocort?

> >

> > Are you able to make the SCD yogurt and add more protein to your diet? Even

a few illegals on SCD will give you problems, especially the bread which has

gluten.

> >

> > Can you make bone broth soup from the fish? Using the fish heads ( but

don't eat them! ) when you make the soup is a good source of iodine for the

thyroid. It may help you to redo the intro diet and progress slowly. Can you eat

ripe bananas?

> >

> > Getting your Master's is a great accomplishment.I am not familiar with the

other medications you are taking.

> >

> > Hope you feel better,

> > PJ

> >

>

[Guest guest]

I haven't found any food yet but today is the day to find out. I'll try banana

pancakes and chicken blended with applesauce to make pancakes. I thought I saw

that in my messages yesterday.

Unfortunately I cannot make the coconut yogurt with gelatin since I can't get

SCD legal gelatin here.

Also with the S. Boulardii its not on the cards yet unless I call in a favour

from a friend. Tuition really took care of that. As for the Masters just started

that September so its two years of school...yippeee!!!....really I love school.

Will try the coconut milk though and the fish head bone broth. I love organ

meats and things of that nature to no end. My mom isn't really computer savvy

but if she has any thoughts I could relay them or just show her where to type,

DWL.

Again, thanks and my day hasn't started out too badly so fingers crossed.

Llemar

22 yrs old, Jamaica

CD 7 years, SCD 2 1/2 years

[Guest guest]

That could be true. I do know I've had an extraordinary amount of gas that has

impeded my healing so I have to consider that. I was like a zombie with bread

when I was on the high dose of Pred. This is the one area I haven't looked into

that much so are there any other things that could help with yeast, possibly

something non-refrigerated?

I also am seeing a re-emergence of eczema on my skin so definitely yeast

overgrowth. What about beet borscht? I love drinking it chilled.

Llemar

22 yrs old, Jamaica

CD 7 years SCD 2 1/2 years

[Guest guest]

you're on no other meds for the cd? it took me humira, rowasa enemas, scd, and

remaing on asacol to get off the pred and maintain.

>

> To make a long story short I was put on prednisone upon leaving the hospital

around August 24 this year. That was the worst experience ever but that is

another post for a book maybe. Initially I was put on 120 mg but I knew that was

crazy so I thought it wiser to start with 60 mg. At 60 mg I was dying, eating

like crazy unable to control my eating habits. I was eating anything, one

chicken in a day and had to break from SCD eating ice and bread. It was murder.

My own personal doctor saw the danger and immediately put me down to 30 mg and I

have been tapering ever since. Now down to 20 mg I still have severe leg pain,

insomnia and days when I just have terrible uncontrollable D.

>

> This is really worrying me. I have just started my Masters degree and I have

to be missing class due to this pain and D. My stomach is so sore for the first

time in years. When I take the dose in the morning its like my insides are been

torn apart.

>

> I've come this far and I really need help. I want to graduate in November

since this would be the proudest day of my life. I have had a rough go with

Crohn's to say the least and SCD took me from the brink of death. My diet is

limited right now to green beans, frozen sweet peas, carrots and chicken with

the occasional fish dish. I need to sleep......

>

> P.S I am on Losec to protect the stomach which I cant see the benefits of and

I got Ulcogant which really gives me bad D.

>

> The leg pain is mostly in my calves and its numbing. Any ideas?

>

> Llemar

> Jamaica

> 22 years old

> CD 7 years, SCD 2 years with occasional slip-up

>

[Guest guest]

Wow, I have no clue but for some reason decided to buy beets to make it bc I

haven't had my favorite beet salad in a while and was gonna make some Sunday.

That's really weird you mention that. Do they eat yeasts?

>

>

> That could be true. I do know I've had an extraordinary amount of gas that has

impeded my healing so I have to consider that. I was like a zombie with bread

when I was on the high dose of Pred. This is the one area I haven't looked into

that much so are there any other things that could help with yeast, possibly

something non-refrigerated?

>

> I also am seeing a re-emergence of eczema on my skin so definitely yeast

overgrowth. What about beet borscht? I love drinking it chilled.

>

> Llemar

> 22 yrs old, Jamaica

> CD 7 years SCD 2 1/2 years

>

[Guest guest]

I am only on Sulfasalazine for the Crohn's but the other meds I'm on are:Mydocalm 150mg 3 tabs a dayLosec 20mg 2 tabs a dayMobic 15mg 1 tab a day (just realized this was an NSAID). Doctors are clueless sometimes...Tylex 750mg 3 tabs a dayThese were all recently added for pain etc. since I started the pred. except for Sulfasalazine. I've never got my diarrhea fully under control for more than a few months but I was really sick and underweight when I began the diet. My doctor didn't even pay me any mind when I mentioned LDN. Funnily enough he is the only doctor who admits diet can can affect bowel diseases. The doctor, a young female in the hospital I was admitted in in August told me" There's no special foods for Crohn's. You can eat anything. Seems like she wants me back there. It is she who gave me 120 mg of prednisone as a matter of fact. Our problem is that the meds are

expensive. Losec is notoriously so. If you have any suggestions about a cost effective medication please let me know. Asacol was murder for me, did nothing. At least I don't get bad side effects with Sulfasalazine although I don't think it does anything much. I'm not a fan of meds but maybe it becomes necessary sometimes.As to beets they are high in sugar along with carrots so they will feed yeast I think. I usually take it to combat anemia and also because they are so good in that rich borscht. Boy, a Jamaican drinking borscht. When I mention that people say "A wa dat? Mi nah eat dat? " That can only be said in patois( Jamaican vernacular).What should I do to help anemia in the absence? of borscht. What other foods should I reduce or eliminate? My diet is already so limited.Llemar 22 yrs oldCD 7 years, SCD 2 1/2 years

[Guest guest]

I am only on Sulfasalazine for the Crohn's but the other meds I'm on are:Mydocalm 150mg 3 tabs a dayLosec 20mg 2 tabs a dayMobic 15mg 1 tab a day (just realized this was an NSAID). Doctors are clueless sometimes...Tylex 750mg 3 tabs a dayThese were all recently added for pain etc. since I started the pred. except for Sulfasalazine. I've never got my diarrhea fully under control for more than a few months but I was really sick and underweight when I began the diet. My doctor didn't even pay me any mind when I mentioned LDN.What happened with this? They didn't give it to you? Funnily enough he is the only doctor who admits diet can can affect bowel diseases. The doctor, a young female in the hospital I was admitted in in August told me" There's no special foods for Crohn's. You can eat anything. Seems like she wants me back there. It is she who gave me 120 mg of prednisone as a matter of fact. Our problem is that the meds are expensive. Losec is notoriously so. If you have any suggestions about a cost effective medication please let me know. Asacol was murder for me, did nothing. At least I don't get bad side effects with Sulfasalazine although I don't think it does anything much. I'm not a fan of meds but maybe it becomes necessary sometimes.As to beets they are high in sugar along with carrots so they will feed yeast I think. I usually take it to combat anemia and also because they are so good in that rich borscht. Boy, a Jamaican drinking borscht. When I mention that people say "A wa dat? Mi nah eat dat? " That can only be said in patois( Jamaican vernacular).What should I do to help anemia in the absence? of borscht. What other foods should I reduce or eliminate? My diet is already so limited.Eat the borscht - it's very healthy and you need the iron. At your weight you are going to have to eat some carbs.Other things will feed the yeast more. You can also eat liver made however you like it for iron. Also spinach. What's the problem with getting s. boulardii in Jamaica?Mara

[Guest guest]

Well I love liver so that is okay. LDN, I don't know how I'd get that other than

going against my doctor. He didn't seem interested when I told him about it.

Spinach isn't common here. That is a more cool weather crop if I'm correct. We

have something we call callaloo here that is pretty similar but I tried it

before and I was could see it being eliminated for up to two days after.

For S. Boulardii that is generally refrigerated from what I see and those supps

aren't common here. I haven't seen it so I could ask around. You have to

remember that Jamaica is tropical and things like squash are imported and

relatively expensive when we can find them.

The Jamaican diet is typically starch heavy. We consume a lot of rice, flour

dumplings (fried and boiled), breadfruit, cassava and yam. There is a reliance

on ground provisions from the past with slavery when slaves survived on them

because they were filling.

[Guest guest]

Llemar,

Since your weight is so low I really think you need to concentrate on

eating plenty of legal carbs, and fat, whatever you can. I think at this

point it's more important than worrying about possible candida. I

would recommend keeping the beets/borscht, and also eating liver whenever

you can. If you don't like liver (like me), I've found that cooking

it very soft and mashing it with homemade mayo, if I have any, minced

onion, maybe legal mustard and pickle, whatever you like, really --

to make liverwurst makes it a lot more palatable to me, anyhow.

Dark green leafy veggies, as well as broccoli, limas, and

artichokes, also are fairly high in iron. Every little bit does

help.

What should I do to help anemia in the absence? of borscht. What

other foods should I reduce or eliminate? My diet is already so limited.

Llemar